Quality of life research in head and neck cancer: A review of the current state of the science

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Abstract

Quality of life (QOL) has become an increasingly important outcome measure for patient's undergoing treatment for a wide array of illnesses. QOL is a global construct that reflects a patient's general sense of well being. It is by definition multi-dimensional and reflective of the patient's point of view. Health related issues are among the many factors that may influence QOL. Since head and neck cancer (HNC) affects structures that are critical for normal functions such as speech and swallowing, and treatment may lead to deformities that adversely impact psychosocial functioning, there is particular interest in assessing QOL in this cohort of patients. In order to interpret the HN QOL literature, it is important to have an understanding of the significance and limitations of QOL assessments in the head and neck patient population as well as an appreciation for the currently available measurement tools. Unfortunately, the HNC QOL literature has many limitations including: small sample size, lack of prospective data and poor study design. None-the-less, important insights can be obtained by review of the current literature. First, it is important that QOL studies be reported in such a way as to provide clinically meaningful data to clinicians. Linking measurements with clinical benchmarks is one way to accomplish this goal. In addition, both general and HNC specific measures are needed in order to provide a comprehensive assessment of global health and tumor specific issues. In general, QOL declines immediately after therapy and returns toward baseline by 1 year. Several factors have been identified that may predict for worse QOL outcomes including: the presence of a feeding tube, co-morbid disease, tracheotomy, site and stage. Data correlating QOL with functional outcome and symptom burden fails to demonstrate a consistent relationship. This may be attributed to methodological issues in study design or the patient's ability to adapt to functional and symptom control problems. Whether routine use of QOL measures in the clinical setting is beneficial to patients has yet to be determined. Further studies are warranted as currently available instruments may not be valid for repeated clinical use.

Introduction

Head and neck cancer (HNC) patients are unique with regards to the potential adverse impact of tumor and its treatment on quality of life (QOL). HNC refers to primary tumors arising out of the larynx, pharynx, oral cavity, paranasal sinuses and the salivary glands. Thus, they arise in areas which are structurally complex and functionally imperative for critical activities such as speech and swallowing. Furthermore, head and neck deformities that result in loss of facial integrity may have profound emotional and social effects. Thus, evaluation of the biopsychosocial sequellae of HNC and its treatment is of great importance [1]. By understanding these effects, we can potentially design interventions that lessen the adverse impact of this disease process.

Concerns about the acute and late effects of combined modality treatment have provided impetus for the recent flurry of studies evaluating QOL and symptom outcomes in patients treated for advanced head and neck cancer [2], [3]. Despite this, the failure to use a consistent definition of QOL and inconsistent use of measures to assess outcomes in HNC patients has led to numerous problems. These include: (1) a lack of consensus of the importance of QOL in managing HNC patients, (2) a debate on how to best assess QOL in HNC patients, and (3) a lack of understanding of how to interpret data [4]. Thus, it is important for clinicians to understand the meaning of QOL, how it is measured, and how it can be used. In the following review, we will begin by defining quality of life and distinguishing it from symptom control outcomes. We will then discuss the psychometric measures and available tools to assess both QOL and symptom control in the head and neck population. We will summarize what we have learned from current studies. Finally, we will use the research to provide recommendations for clinical practice.

Section snippets

Defining QOL and symptom control

QOL is a global construct that has developed over the past three decades in response to the perceived need to assess the patient's overall sense of well-being and how it relates to disease and disease treatment [5], [6], [7]. QOL is affected by intrinsic characteristics of each individual patient including: beliefs, expectations and experiences [6]. Thus, QOL must be evaluated from the patient's perspective. This view has been supported by the World Health Organization which defines QOL as “an

Significance of QOL in HNC

QOL data can provide information that guides health care related decision making on several levels [12]. First, it can help shape public policy and health care decisions made by governmental and private institutions. It can also guide the research agenda of pharmaceutical companies and cooperative groups. Most importantly, QOL measurement can provide information to guide clinical decision making [13]. QOL studies should inform the practitioner about the impact of specific treatments on

Limitations of QOL research in HNC

From a health care provider's perspective, the global definition of QOL leaves much to be desired. First, QOL research has, at times, failed to provide health care professionals with clinically relevant and interpretable information that can guide treatment decisions. This has led researchers to attempt to make commonly used research tools more accessible to the practicing clinician [14]. One way of doing this is to take an individual tool and define the changes in score that are clinically

Head and neck HRQOL instruments

HRQOL measurement tools should be easy to administer, easy to understand and easy to score. They should have been tested and found to be valid (measure what they say they measure), reliable (produces the same results in the same patient group when repeated), and sensitive (responsive to change in patient's condition). Most importantly, they should be clinically relevant. In other words, they should provide information that will help the physician in management of the patient's condition. Such

It is important to know how to define a clinically significant outcome

Defining a clinically significant improvement in outcome is easier when the outcome measure is survival. It is intuitively obvious that an increase in 3-year survival of 15% is clinically significant. However, the subjective nature of HRQOL and the various response formats and scaling methods used for self-report tools makes it difficult for the clinician to interpret scores. Unfortunately, limited work in HNC has been reported in which investigators have systematically attempted to define

Conclusion

As we continue to investigate new treatment regimens in the hopes of improving the survival of patients with head and neck cancer, it is important that we simultaneously continue to assess the biospychosocial ramifications of therapy. Well conducted, hypothesis driven studies using validated tools provide critical information to guide patients and health care providers in clinical treatment decisions. This implies understanding the difference between general QOL and symptom assessment as well

Barbara A. Murphy, associate professor in the Division of Hematology/Oncology, serves as the leader of the Head and Neck Research Team and the director of the Pain and Symptom Management Program (PSMP) at the Vanderbilt Ingram Cancer Center. The dual role allows her to pursue her personal area of research interest: the early and late sequella of treatment for head and neck cancer patients. The PSMP Research Team is a multi-disciplinary group of investigators representing the School of Nursing,

References (80)

  • G.J. Moore et al.

    Quality of life outcomes after primary radiotherapy for squamous cell carcinoma of the base of tongue

    Int J Radiation Biol Phys

    (1996)
  • B.A. Murphy et al.

    Head and neck cancer

  • M. Farguhar

    Definitions of quality of life: taxonomy

    J Adv Nursing

    (1995)
  • D. Osoba

    Lessons learned from measuring health-related quality of life in Oncology

    J Clin Oncol

    (1994)
  • M.A. Testa et al.

    Assessment of quality-of-life outcomes

    N Engl J Med

    (1996)
  • D. Cella et al.

    Measuring quality of life today: methodologic issues

    Oncology

    (1990)
  • World Health Organization. WHO Health Promotion Glossary 1998. WHO/HPR/HEP/98.1, World Health Organization, Geneva,...
  • Calman, K., Definitions and Dimensions of Quality of Life, in The Quality of Life of Cancer Patients, J.B. NK Aaronson,...
  • I.B. Wilson et al.

    Health-related quality of life, a conceptual modle of patient outcomes

    JAMA

    (1995)
  • P. Sleby

    The value of quality of life scores in clinical cancer research

    Eur J Cancer

    (1993)
  • I. Higginson

    Using quality of life measures in the clinical setting

    BJM

    (2001)
  • G.H. Guyatt et al.

    Measuring health-related quality of life

    Ann Intern Med

    (1993)
  • J.E. Ware et al.

    The MOS 36-Item short-form health survey (SF-36)

    Med Care

    (1992)
  • M. Berbner et al.

    The sickness impact profile: development and final revision of a health status measure

    Med Care

    (1981)
  • M. Bergner

    Development, testing, and use of the Sickness Impact Profile

  • D. Cella

    The functional assessment of cancer therapy (FACT) scale: development and validation of a general measure

    J Clin Oncol

    (1993)
  • D. Cella

    FACIT manual: manual of the functional assessment of chronic illness therapy system (version 4)

    (1997)
  • N.K. Aaronson et al.

    The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use international clinical trials in oncology

    J Natl Cancer Inst

    (1993)
  • L.L. D’Antonio et al.

    Quality of life and functional status measures in patients with head and neck cancer

    Arch Otolaryngol Head Neck Surg

    (1996)
  • K. Bjordal

    Quality of life in head and neck cancer patients: validation of the European Organization for research and treatment of cancer quality of life questionnaire-H&N35

    J Clin Oncol

    (1999)
  • A.C. Sherman et al.

    Assessing quality of life in patients with head and neck cancer: cross-validation of the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Head and Neck Module (QLQ-H&N35)

    Arch Otolaryngol Head Neck Surg

    (2000)
  • N. Wells et al.

    Quality of life and pain assessment for head and neck cancer patients treated on E1395: a comparison of two different cisplatin-based chemotherapy regimens

    Proc Amer Soc Clin Oncol

    (2002)
  • L. Millsopp et al.

    Patient's response using free text in the University of Washington Quality of Life Scale

    Head Neck

    (2003)
  • F.W.B. Deleyiannis et al.

    Quality of life of disease-free survivors of advanced (stage III or IV) oropharyngeal cancer

    Head Neck

    (1997)
  • S.J. Hassan et al.

    Assessment of quality of life in head and neck cancer patients

    Head Neck

    (1993)
  • M.A. List et al.

    A performance status scale for head and neck cancer patients

    Cancer

    (1990)
  • J.E. Terrell et al.

    The clinical predictors of quality of life in patients with head and neck cancer

    Arch Otolaryngol Head Neck Surg

    (2004)
  • G.P. Browman et al.

    The head and neck radiotherapy questionnaire: A morbidity/Quality-of-Life instrument for clinical trials of radiation therapy in locally advanced head and neck cancer

    J Clin Oncol

    (1993)
  • Murphy BA, WN, Dowlin E, et al., The Vanderbilt Head and Neck Symptom Survey (VHNSS): a self-report measure of...
  • Murphy BA, WN, Cmelak A, et al., Reliability and validity for the Vanderbilt Head and Neck Symptom Survey (VHNSS): A...
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    Barbara A. Murphy, associate professor in the Division of Hematology/Oncology, serves as the leader of the Head and Neck Research Team and the director of the Pain and Symptom Management Program (PSMP) at the Vanderbilt Ingram Cancer Center. The dual role allows her to pursue her personal area of research interest: the early and late sequella of treatment for head and neck cancer patients. The PSMP Research Team is a multi-disciplinary group of investigators representing the School of Nursing, Peabody College, the Divinity School, Alive Hospice, and Meharry Medical College. She is collaborating with members of the PSMP Research Team to assess the following issues in head and neck cancer patients: (1) swallowing, nutritional and metabolic changes in head and neck cancer patients undergoing chemoradiation, (2) neuroncognitive changes associated with treatment, (3) social phobia and avoidance, and (4) interventions strategies for limiting the late effects of therapy. Her second area of interest is systems approaches to improving pain control. She is Co-PI on an R-01 evaluating the efficacy of an opioid titration order sheet for improving pain in outpatients with cancer. She is the PI of an R-21 which extends this area of research to the hospice setting.

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